Escape, expand, embrace: the transformational lived experience of rediscovering the self and the other while dancing with Parkinson's or Multiple Sclerosis

• Published in: International journal of qualitative studies on health and well-being Vol. 18; no. 1; p. 2143611
• Main Authors: Carapellotti, Anna M., Meijerink, Hannie (J.E.M.), Gravemaker-Scott, Christine, Thielman, Lucia, Kool, Renée, Lewin, Natalie, Abma, Tineke A.
• Format: Journal Article
• Language: English
• Published: Abingdon Taylor & Francis 31.12.2023; Taylor & Francis Ltd; Taylor & Francis Group
• Subjects: chronic illness; Chronic illnesses; Dance; Dancers; Dancing; Empirical Studies; Frame analysis; inclusive dance; Interpretative phenomenological analysis; lived experience; Multiple Sclerosis; Parkinson's disease; participatory health research; Participatory research; Qualitative research; Storytelling
• ISSN: 1748-2631; 1748-2623; 1748-2631
• DOI: 10.1080/17482631.2022.2143611

The purpose of this study was to explore the lived experience of dancing with Parkinson's and Multiple Sclerosis in an inclusive dance group called ReDiscoverMe (RDM). Participatory research approaches and interpretative phenomenological analysis were used to make sense of the lived experience captured in interviews and observations. Arthur Frank's conceptual framework on embodied storytelling from his book The Wounded Storyteller was the study's theoretical lens. Themes are both described and represented in images made by an RDM participant. Dancing in a nonjudgmental environment was described by participants as a way to rediscover themselves while continually adapting to living with chronic illness. We interpreted this experience of rediscovery as an active, recursive process involving three "movements": escaping, expanding, and embracing. Through these movements, participants could rise above the self and illness. The lived experience of dancing in this group was characterized by transformations of the body, self, and life. Through escaping, expanding, and embracing, participants could more easily embrace the body's contingency, integrate the self and body by becoming dancers, connect with others living with illness, and produce desire through passion. Participants could therefore experience illness as a journey and gain something from the experience.